I write as an outlet, as two of our children battle cancer, positive for Li-Fraumeni Syndrome. I cannot say how often I have heard the phrase, "I cannot even imagine..." but hope to give a glimpse of what this is like...and to reassure you that it is not all bad, despite the challenges.

Monday, July 22, 2013

Help on the inside

I woke today, thinking about the changing of the guard. We have done another year, and seen another group of doctors move on to new opportunities.

Back in Ohio, when Lauren had her scans two weeks ago, I was forced to work my way through a number of people that I haven't met yet, and who have little experience in the University Hospitals system, much less with the crazy things that the Ramers have working.

We became increasingly worried that evening, as we didn't get the call about Lauren's scan results and labs like we always have. The last time the hospital didn't call until late, they were cooking up Christmas plans for brain surgery, so our anxiety was at least grounded in experience. Going off of routine is never good on scan day, which is the time when we most often repeat the phrase "Boring is Beautiful."

Finally, by 10 pm, to avoid crawling out of my skin any further, I called. I became increasingly frustrated, trying to get information out of strangers, who understandably wanted to follow protocol on their first day, and were reluctant to use alternate routes to information, suggested by me, a person that they didn't know. I do get it, from their perspective. I had to work hard, but after a series of phone calls back and forth, each with me rejecting the idea of 'calling back in the morning,' I got some answers.

Anyone who has gone through cancer can attest to scanxiety. We manage pretty well, but I need to tuck away the fact that summer scans will likely bring the challenge of newbies, and potential difficulty getting results. I mean no disrespect here, and look forward to meeting these new folks in a couple of months when we return. (How delicious does that sound?!)

Yes, the scans ended up clean, in case I left that in doubt.

So, as I mentioned, it is a universal time for docs to leave the nest and move on to other institutions, taking what they have learned and applying it to new patients, new situations. This includes those here MSKCC. We said goodbye to a number of doctors this weekend, and find that we have met many new ones as we leave. I do not want to get to know these new ones at all, if you know what I mean.

There is undeniable advantage, however, in having people inside who know you, and who understand how to make the system work for you, be it in a hospital, insurance company, actually any large institution. We find that at this time of year, we are in some ways the veterans, knowing how things are done and what in fact can be done. Unfortunately, this is the voice of experience. I could do without the experience.

Part of beating cancer, is the medicine. We are hugely compliant in this, evidenced by the fact that baby Vanco will be coming home again for a few days. If it is medical marching orders that we get, we are great soldiers. I have an alarm on my phone to remind me of what we need to do, and when we need to do it.

But, the other part of getting through cancer, is working through the institutions in order to have a sane life. For me, the rules of the hospital are somewhat 'lesser' commandments. They are more like guidelines, for those who lack common sense or courtesy. Umm, I view them as suggestions (visiting hours and age restrictions comes most immediately to mind). Ok, as I continue to backpedal, much of it is arbitrary nonsense, and must be worked around.

Making any of this work for my child and for my family, sometimes means bending institutional "rules" a bit, while, of course, maintaining respect for the health, healing and sanity of those around us, patient and health care worker alike.

Considering how many doctors I deal with, for example, I personally wish that emailing was a bit more common, and encryption a bit less. I recognize that everyone isn't as open as we are (most people don't blog the details of their health, or post X-rays to help explain things), but HIPPA and encryption are obstacles for me, rather than protections. Multiple 'release of information' forms, email permission slips for each individual doctor (are you kidding?) and institutional encryption worthy of Soviet cold war secrets, well, I haven't the time.

I have been fortunate to have had the the help of folks on the 'inside,' to help cut red tape and to make our hospital lives run as smoothly as possible. Considering how much of our lives have been in hospital over the past two years, having our hospital lives "work" is no small thing. But, as those folks graduate and move on, so must we.

And with any luck, we will have fewer doctors to email, and less reason to care if our hospital lives "work."

About Me

Our pediatric cancer adventure was complicated by the discovery of a genetic mutation (Li-Fraumeni Syndrome) which predisposes two of my children to all forms of cancer. While Brent, now 16, battled osteosarcoma (bone cancer), we found that Lauren, now 13, had a rare brain tumor. Since our initial problems in 2011, Brent developed two subsequent cancers (Metastatic melanoma and AML--a leukemia that required bone marrow transplant) and Lauren had a second brain tumor removed.

I share both the challenges and the blessings of this life, pretty freely.